DeeCee  Posted: 06/06/2012 17:43

Georgeone,

We all seem to have different degrees of the disease, and reading the posts I realise I have been lucky and escaped any obvious permanent deformity, hands and feet reduced in size immediately after the op, vision returned to normal and headaches went away. Last MRI was clear but I still had elevated IGF1, I am only taking Dostinex for now and seem to be responding well, recent blood test showed normal IGF1 so Endocrinologist reduced dosage to half a tab once a week.

I resisted advice to have the radiotherapy as it ultimately destroys the pituitary function leading to hormone replacement for life. If you get a good result from the operation I would suggest you hold off Radiotherapy for as long as possible.

It is great to hear that Prof Philips position has finally been filled, it really annoyed me I had to go to the UK to get sorted.

Good Luck with the operation

Derek

georgeone  Posted: 05/06/2012 09:41

marps,

great to hear from someone whom has had a positive outcome, i hope all continues to go well for you.

thanks,

george

Marps  Posted: 31/05/2012 17:43

Hi all

I had surgery in Beaumont Hospital 9 years ago for acromegaly - it was a microadenoma and luckily not near carotid or any other vital blood vessels.  Prof Jack Phillips was my Surgeon and I will always be grateful to him for ridding me of this horrible disease.  I am completely cured but I still attend Prof Chris Thompson once a year for a check up just to make sure it doesn't recur - in fact I was with him last Monday and my blood tests were all well within normal ranges.  I cannot praise Beaumont Hospital and the clinicians under whose care I was lucky to be under.  I know Prof Phillips has now retired but as far as I know Beaumont is the main centre in Ireland for pituitary conditions and Prof Thompson and his endocrinology team are very well respected in the field of academic pituitary research.  

While I know I have been very lucky and it took me a very long time to stop worrying that it would come back I wish you all the best of luck in conquering this horrible disfiguring disease.

georgeone  Posted: 29/05/2012 23:20

hello hopefull lady,

many thanks for your info and advice, its great to hear from people who have been thru the treatment, as most other people you are engaging with havent a clue when you are discussing it with them,

best regards,

george.

georgeone  Posted: 29/05/2012 23:17

derek,

thanks for taking the time to post your info, i have been told i will be going to a professor in beaumount soon, so hopefully the ball is rolling, headaches geeting worse and effecting my left eye,

regards,

george.

kissxxes  Posted: 28/05/2012 14:03

Hi Hopeful Lady,

I am on the Dostinex for increades prolactin as far as i know. I was on it twice a week but am now taking it once a week. i was told that i can come off it but risk higher levels and irregular menstrual cycle if i do, think i'll stick with it, to be honest a small tablet once a week is the least of my worries. Have put on so much weight since starting the daily somavert injections, it is awful, constantly hungry and craving sweet things when i never did before. I sometimes feel that i have more side effects from the medication than i have from the actual condition.

I am sorry to hear that you have to start taking the dreaded steroids, took them after both operations and they are not nice, was also told to take them during radiotherapy as had fluid build up around my eye and bad pain but i refused. 

Try to keep checking your levels as much as possible, long term steroid use cannot be good. Hopefully your doctor will have some good news when you meet him in 2 weeks.

x

hopeful lady  Posted: 26/05/2012 22:11

Hi Kissxxes, sorry to hear your story too, and hope every thing goes well with you after radiotherpy. Are you taking dostinex for Gh or prolactin because I know it helps in lowering both hormones, i ask this because my doctor told me I might need to be on tabs for further reducing to my GH ,beside lanreotide, so I think it may be dostinex, I will meet him after 2 weeks anyway and know if i need to take it. The worse thing is that the nurse called me a week ago telling my that my cortisol level was low,after she got my blood result, and that I have to start hydrocortisone immediately, so I did and, now Iam ready to gain tons of weight:(

taylor  Posted: 25/05/2012 19:14

kissxxes  Posted: 24/05/2012 20:19

Hi everyone,

I am the woman who posted the first comment on this topic. I wish ye all well and hope that some day a better treatment will become available for this awful condition. I am sorry to hear all of your stories. I am living in Cork and so i underwent both of my surgeries in CUH, They were both fairly unsuccesful as my tumor had grown around the carteroid artery and was impossible to completely remove although the surgeon did debulk quiet a bit in the first surgery, i do not know how much he took in the second as i waited a year to be given an mri so at  that stage it could have grown again so impossible to know. I have since undergone Radiotherapy treatment which im told could take 5 years to work, by which time my pituitary function could be greatly reduced also.  I am on daily injections of pegvisomant, 2 monthly injections of Sandostatin and dostinex once weekly. Oh for a day to be free of medication.

hopeful lady  Posted: 24/05/2012 15:21

Hi Goerge, I have just registerd here after I found your post while I was looking up acromeglic articles. I am not Irish but I have had my pituitary tumor removed here, my GH was very high and my vision was affected. I have got my first operation done in the end of 2009, and because my tumor regrew again I had the second in 9 month later. Mean while I was on hydrocortisone, my Gh lowered a bit but still high. My doctor hasn't removed all the tumor for fear of damage of surrounding structures so that he  recommended radiotherapy treatment to reduce the tumor size and reduce the possibility of reccurency. I had the radiotherapy in 2011 in UK (cyberknife radiotherapy is not available in Ireland), however my Gh was still far above the normal and now Iam on Lanreotide inj which It helps a lot in reducing my Gh. Sorry for the long story, and back to your question- I had my operations in beaumont hospital and I am very satisfied about the surgon, he is very good and caring. The endocrinolgistS are good as well and the follow up is perfect. I hope my long story is not furstrating and wish you a good luck in your treatment. Cheers

DeeCee  Posted: 22/05/2012 14:42

Hi George,

Not sure how things currently stand but Beaumont Hospital in Dublin is probably where most Pituitary surgery is carried out in Ireland, (I know there is a nurosurgery unit in Cork as well), problem is that there is no full time pituitary specialist so you might want to think about looking to the UK, have a look at my article below for chapter and verse. Get on the list as quick as you can I had to wait months for a consultation.

Goodluck

Derek

georgeone  Posted: 18/05/2012 23:39

hi, i have just been diganosed with acromagely, toatlly frustrated at the lack of info, and it seems that the medical people are not 100% sure as to how to proceed,what is really getting me down is i had 3 operations in the past 2 years related to symptons of the condition, but it was never picked up in all the blood tests i have had, only for a medical freind which i hadnt seen for years picked up on it, i would still be going around thinking i was mad, now the tell me i amy have had this condition for 12 years, where is the best treament hospital in ireland?

thanks,

george

taylor  Posted: 13/05/2012 11:10

Www.piyuitary.org.uk has lots of info ,

 I am a pituitary patient, had a Craniopharyngioma tumour, had my Pituitary Gland removed 20 years ago. Ive Tunnel Vision and Im on Hormone Replacement Meds, Growth Hormone, Testostrone, Eltroxin, Hydrocortosone etc etc. I'm part of Uk & Irish Pituitary foundation, trying to Create Awareness as Pituitary Tumours / Disorders are quite rare, if you'd like more info just ask

DeeCee  Posted: 20/06/2011 16:12

Hi Folks, I am a 51 your old man from Dublin, diagnosed three and a half years ago with Acromegaly, had a macro adenoma that needed to be surgically removed, originally went to GP with headaches, muscle cramps, pain in the jaw, high BP and a general feeling of not being quite right. Because the GP had seen a patient with Acromegaly previously he put 2 and 2 together and sent off bloods looking for elevated Growth Hormone, (Most GPs have not seen the condition and miss the symptoms) came back with high IGF-1 levels. I was referred to an endocrinologist in the Hermitage Clinic, Dublin, lots of blood tests and an MRI later and the diagnosis was confirmed. Surgery was required and so I was referred to the neurosurgery unit in Beaumont Hospital. The earliest consultant appointment available was nine months later! The Dublin surgeon was dismissive, anticipated a poor outcome and said he would operate in Jan 2010, I still haven’t heard from him! I started looking around and got great support from German and US clinics via email, (very expensive if you go privately). Eventually was referred by a German Professor to Michael Powell in London, he reviewed my scans before I met him in Dec 2009, and gave me a March 2010 date for surgery,

Fact 1: there are not enough Neurosurgeons for the population of Ireland

Fact 2: There is no specialised Pituitary surgeon in Ireland. (This is important from the point of view of getting an op funded outside of Ireland)

Fact 3: Statistical studies show the quality of the surgical outcome is directly related to the experience of the surgeon, you need one who does 200-300 pituitaries a year.

Fact 4: Your endocrinologist is unlikely to chase a solution outside of Ireland (afraid of upsetting the locals)

I went to the VHI looking for funding to have the surgery in the UK, I also approached the HSE to see if it was allowable on an E112 application, Bottom line, VHI part funded, I coughed up the rest but if I was prepared to go on an NHS waiting list (About 6-8 weeks) I could have had it funded by the HSE on the basis there is no specialist Pituitary surgeon in Ireland and this would directly effect the medical outcome.

I had the surgery in March, very impressed with the National Hospital for Neurology and Neurosurgery in London. Current Status is that I got immediate relieve from the course symptoms (headaches, sight etc.) and almost got a full cure, a year later my IGF-1 is rising so I still need to decide on radiation and/or somatosatins, I still do not have the energy and motivation I had before and I have to admit to feeling anxious and down frequently (not my natural demeanour!). Studies show this is not uncommon where pituitary hormone problems are concerned.

Anyway I hope this story helps, if you require surgery you need to bang on doors, find the right guy and chase for funding. I have heard of stories of Irish patients waiting months and years for surgery while suffering severe headaches, disfigurement and sight loss, this is wrong, there are other options.

USEFUL LINKS: 

http://pituitary.mgh.harvard.edu/APED2008.htm

http://www.acromegaly.org/

http://pituitary.mgh.harvard.edu/e-s-963.htm

http://jcem.endojournals.org/content/89/11/5369.abstract

kissxxes  Posted: 17/03/2010 22:07

Hi Pijy, it's great to hear from someone else with this condition, sometimes i feel like im all on my own, even my gp knows very little so its hard to get any support and unless you have the condition you cant understand the daily pains both emotional and physical that we go through. Were you diagnosed with acromegaly or is it a prolactinoma?

I'm living in Cork and had an operation to debulk the tumor last October, unfortunately they didnt get enough and all my levels are still high so im waiting for an appointment for a second operation now. the tumor was affecting my sight so i really had no choice but to go for surgery, i cant understand why they wont operate on yours, yes mostly the tumors are slow growing but i also know that the sooner you operate the more chance you have of getting it all and getting a "cure" They will never be able to remove all of mine as it has grown in to sinus cavity. Are you on any medication now to shrink the tumor?

I was also trying for a baby when i was diagnosed so i know how hard it is to be told to forget about it. Hormones in pregnancy will make the tumor grow so its probably best to get things under control beforehand. Also surgery can sometimes knock out your pituitary function, this may be a reason for not doing a surgery if all your levels are ok.

I would love to chat more to you, finding people who understand really helps. try not to let this get you down, tell your gp and your endocrinologist exactly how you feel, and make sure your getting the best treatment for you.

kissxxes

pijy  Posted: 15/03/2010 22:16

OMG kisses, Im so glad i found you! i was diagnosed in january this year with tumor also, mine is macro. Now mine is unusual! I had a cyst on my gland 4 years ago, to much prolactin, took tablets for 1 year forgot about it, had ct/mri done in january and now it's grown into a macro, they dont want to remove at moment becaus all my hormones vision etc is fine, but I just dont feel myself, tired, depressed I could go on and yes deffo there is not enough info in this country to comfort us! but dont worry hon, this tumor won't kill you, it's 99% benign...if you want to ever talk let me know I can give you my email etc. where are you in ireland? take care and try not to dwell too much, ever since i was diagnosed, i've had anxiety, stress, every ache and pain known to mankind. My muscles ache, im down no interest in anything. Im 33 years old, but my point is, do i have to wait 'til it does start effecting me more? I was hoping to have a child this year, and i was told to leave well enough alone, and not to have surgery unless necessary, dont understand does it suddenly stop growing or what, was in BEaumont Hos Dublin for a week also ! take care pijy

kissxxes  Posted: 16/01/2010 00:55

I'm female, 25 and have a condition called acromegaly which is caused by a tumor of the pituitary gland which releases too much growth hormone. This is a rare enough condition but tumors of the pituitary can cause all sorts of problems for people. I'm just wondering if any one else has a pituitary tumor or acromegaly. There are no support networks in Ireland and any online forums are mainly in America, i would love to talk to someone from Ireland as our health service is so different to theirs and the choice of drug treatments and surgeryies vary.

Also I'm just going to give a few symptoms of the disease and raised hormone levels as i think people need to be more aware of this awful condition.

Loss of periods, Breast Milk (Lactation - without pregnancy), headaches, visual changes, change in shoe size, weight gain, facial changes (squareness of the jaw or a change in your nasal bridge, you may not notice these signs yourself as the changes will be slow but maybe someone that hasn't seen you in awhile will notice) acne, change in size of fingers ( are rings too tight? ), tiredness, muscle aches - These are a few of the main ones, if any one you have noticed any of these changes, please ask your GP for a blood test that will check for raised prolactin levels as the sooner you are diagnosed the better chance you have.